A LITTLE boy with a rare genetic condition has been given a helping hand thanks to a community effort by a group of local people.
Little Albert Joseph, two, was diagnosed a few months ago with a rare genetic condition called Lamb Shaffer Syndrome (LSS). Alby is currently the only person in NSW diagnosed with the condition, one of three people in Australia, and one of about three hundred people worldwide known to have the condition.
LSS can affect people in many ways. Alby has global developmental delay and finds every type of movement challenging ranging from speech, gestures and mobility.
His mum, Louise, said some of the hardest things for Alby to do was move freely. He cannot walk or communicate easily, and cannot shift between positions such as from sitting to standing, and it is hard to see him upset and frustrated.
"He just wants to move and explore like other two-year-olds."
Louise said Alby has an incredible team of allied health therapists here in Bathurst and Orange, and attends two amazing daycares who greatly contribute to his learning and development.
"One of these is the village daycare, Galloping Gumnuts, close to where Alby lives in O'Connell. All of Alby's educators have been so supportive in finding ways to help Alby's development and the thoughtful Director of Galloping Gumnuts, Carol Drummond, contacted the indefatigable Occupational Therapist Vanessa Mahon from Back on Track Health Solutions (who is also part of the O'Connell community), for strategies to help Alby move and explore outside.
"Vanessa and her father Phillip took it upon themselves to design a walker for Alby that he could easily use and would let him get around outside and develop his walking ability.
"Alby took about two days to learn to use this walker that Vanessa designed and Phillip built. He had trialed other pediatric walkers that pulled from behind but with his particular challenges, he hadn't been able to master this movement. Within days he was happier, more active, more interactive and more confident - it has truly been life changing for him," he said.
But Louise said there were a couple of adjustments needed and that's where Craig and the experts at the Neighborhood Centre Builders and Metalco got involved.
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"Vanessa and her father asked them to help to modify the walker for Alby and we couldn't believe that in less than 48 hours they had it ready," he said.
"Alby and I went to meet Craig and Vanessa to collect it and when Alby saw the walker he squealed with joy and leapt out of my arms...straight onto his new walker, almost sprinting along, without stopping for 20m while he threw some smiles back at everyone to communicate how happy he was."
Louise said there were some happy tears from the adults involved at the sight of Alby bowling along on his walker with a big smile on his face and Alby threw his arms around Vanessa to give her a hug and to show her how happy he was.
"With Back on Track's design and the input of the Neighbourhood Centre Builders and Metalco the walker quite literally suits him down to the ground," he said.
Louise and her husband Andrew were incredibly grateful to everyone involved especially Vanessa Mahon and Adam Lavelle from Back on Track Health Solutions, Vanessa's father Phillip Mahon, Craig and his team from the Neighbourhood Centre Builders, the team at Metalco in Kelso, and Galloping Gumnuts Early Childhood Education Service.
"Their generosity and dedication in making this incredible walker for Alby has opened up his world and brought the biggest smile to his face," they said.
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